How Cancer Survivors Provide Support on Cancer-Related Internet Mailing Lists

Abstract

Background Internet mailing lists are an important and increasingly common way for cancer survivors to find information and support. Most studies of these mailing lists have investigated lists dedicated to one type of cancer, most often breast cancer. Little is known about whether the lessons learned from experiences with breast cancer lists apply to other cancers.Objectives The aim of the study was to compare the structural characteristics of 10 Internet cancer-related mailing lists and identify the processes by which cancer survivors provide support.Methods We studied a systematic 9% sample of email messages sent over five months to 10 cancer mailing lists hosted by the Association of Cancer Online Resources (ACOR). Content analyses were used to compare the structural characteristics of the lists, including participation rates and members’ identities as survivors or caregivers. We used thematic analyses to examine the types of support that list members provided through their message texts.Results Content analyses showed that characteristics of list members and subscriber participation rates varied across the lists. Thematic analyses revealed very little “off topic” discussion. Feedback from listowners indicated that they actively modeled appropriate communication on their lists and worked to keep discussions civil and focused. In all lists, members offered support much more frequently than they requested it; survivors were somewhat more likely than caregivers to offer rather than to ask for support. The most common topics in survivors’ messages were about treatment information and how to communicate with health care providers. Although expressions of emotional support were less common than informational support, they appeared in all lists. Many messages that contained narratives of illness or treatment did not specifically ask for help but provided emotional support by reassuring listmates that they were not alone in their struggles with cancer. Survivors’ explicit expressions of emotional support tended to be messages that encouraged active coping. Such messages also provided senders with opportunities to assume personally empowering “helper” roles that supported self-esteem.Conclusions Many cancer survivors use the Internet to seek informational and emotional support. Across 10 lists for different cancers, informational support was the main communication style. Our finding of an emphasis on informational support is in contrast to most prior literature, which has focused on emotional support. We found the most common expressions of support were offers of technical information and explicit advice about how to communicate with health care providers. Topics and proportions of informational and emotional support differed across the lists. Our previous surveys of ACOR subscribers showed that they join the lists primarily to seek information; this qualitative study shows that they can and do find what they seek. They also find opportunities to play rewarding roles as support givers.

What is the role of online support from the perspective of facilitators of face-to-face support groups? A multi-method study of the use of breast cancer online communities

“…And nobody is going to keep emailing me or contacting me.'' Like previous studies with more typical cancer survivors [33,34], participants in our sample turned to online communities primarily for information, and less so for emotional support. Our study supports previous research describing the main advantages and disadvantages of the Internet as a communication tool [8,11,12,[35][36][37].…”

“…Although previous studies have used stress and coping theories to explain the effects of online communities among breast cancer survivors [9,33,35,47,48], and technology adoption theories to explain intentions to use non-health related online communities [46], no known studies have used these theoretical perspectives in combination for this purpose. Table 8 lists principles and constructs from these theories and the corresponding results.…”

“…A content analysis of 10 cancer mailing lists revealed numerous examples of active coping behaviors, and encouragement from other community members to employ active coping strategies [33]. Similarly, a survey with users and non-users of cancer online communities, demonstrated that cognitive avoidance, a form of passive coping was associated with non-use [33]. Seeking information is also considered a form of cognitive control and means to gain mastery over an event [29].…”

Assessing Unmet Information Needs of Breast Cancer Survivors: Exploratory Study of Online Health Forums Using Text Classification and Retrieval (Preprint)

“…Automated methods work best when units can be assigned a single or small number of label(s). However, postings to webbased health forums and internet email discussion groups, which are asynchronous and do not significantly limit the length of postings, tend to combine social communication with "technical information about treatments, side effects, clinical trials, empathic comments, requests for information, (and) meta-comments about group processes [16]", each of which will naturally involve a distinct sub-language.…”

Everyday-ing Health Literacy and the Imperative of Health Communication: A Critical Agenda

“…P2P communication also provides information related to how patients can communicate with medical specialist. The study by Meier et al (2007) looks, for example, at how cancer patients can develop linguistic competence in everyday communication with the medical expert. These information are, however, 'instructional' and 'pedagogical' (Evans et al 2009) at best, and may not promote a more dynamic way of promoting health literacy.…”